The Ride Home, Notes About the Trip, Videos

The ride home from Disney was not nearly as fun as the ride there, I'm not sure if it was the lack of exciting anticipation to start the vacation or the fact that we had to begin with LA traffic but it took us forever to get out of the city and actually on the road. We had to get gas and then Holly had a super messy diaper then when we got over the mountain and pasted six flags and decided to stop for some food. Holly had a lot of energy so we went to a mcDonalds with an indoor playground which was fun but all this was add into to the length of our trip. Later we stopped again because I had to use the bathroom and ran out of my drink at Coalinga and when I opened the car door I felt like I was going to melt and the 1 minute walk inside made me feel like I was cooking. It was much hotter on this day driving home then when we drove to Disney. Later I checked what the temperature was and discovered it had been 105. I think it was around 7:45 when we got home. That said there were lots of fun parts of our road trip too. Holly had new Princess dolls and she really liked them. We all also spent a lot of time singing in the car, and I got lots of time to chit chat with Joel. Holly has recently "learned" to sing herself. it has been really exciting for me. Sometimes her singing is more like shouting, but it is a long group of memorized words in a sing song like voice, and I have several video's of her little songs here.

Happy Birthday
http://www.youtube.com/watch?v=WAKvDeoXm9Y

So we have been learning time based on events, so our trip to "Tinkerbell's Castle" was after mommy's, Sara's, and Chloe's Birthday. Then she wanted to know when Daddy's Birthday was. We told her it was after Tinkerbell's Castle, and Kaylee's Birthday. Next Month. Sometimes though, she doesn't quite yet get how long away those times are. Here she decided to sing Happy Birthday to Daddy.

Rock-a-bye Tinkerbell
http://www.youtube.com/watch?v=jmRLlk6dJKI

Here she is singing Rock-a-bye baby to Tinkerbell. It is one of the songs I sing to her and I have to replace baby with Mommy, or Daddy, or Chloe, or a friend from school. In this version she decided to sing it for Tinkerbell.

Holly Singing in Car
http://www.youtube.com/watch?v=Dyag5cf1_vc

I was trying to catch her singing Doe a Deer as it makes my heart super happy but I only got the tale end and then she begins Rock-a-Bye baby in a tree top. The drive home from Disney to Berkeley is long and she has to entertain herself somehow :-) She actually sang Doe a Deer several times but we didn't have the camera ready

Resists singing
http://www.youtube.com/watch?v=90lir8rVAic

After singing Doe a Deer several times, now that we have the video camera out and ready to refusing to sing it anymore. She is such a little gremlin, so cute in her trouble makingness that you just got to laugh. She know we want her to do something so she will do anything but that. Sigh! Another thing Holly did to entertain herself was grab the camera from Daddy and take pictures. She took about 50 but I spared you by only posting a few shots. Most had her chubby little fingers in them. Many of them were of Mommy and then she had lots of the window as she tried to get pictures of outside. It was cute. She doesn't get that she has to aim the camera and she puts it up to her face, facing herself so there were several pictures of a smooshed nose.

So the last thing I wanted to talk about was the Guest Assistance Pass we used at Disney. This made the trip for us and I could not imagine the very different experience we might have had without it. On the first day we waited in line for Tinkerbell, and Daddy waited in like for Rapunzel, these lines were short compared to later days and the wait in many of the ride lines. Also on the first day it was relatively cool still, overcast and we waited in line in a shady area for those two character meets. That said, Holly was quite a little terror, sitting still was extremely difficult for her, and the heat was super agitating. Also you are not allowed regularly to take stroller's in line with you, and without the stroller it would have been a total nightmare. So the Guest Assistance Pass is for Guests with Special needs. the most obvious would be someone in a wheel chair, but because that is obvious they don't always need our pass. For guests without visible disabilities or issues you can get this pass from Guest Services. In our case I had my doctor write me a note stating her diagnosis of Fragile X, but according to the websites the note is not required, just makes it easier.

They asked me to describe her issues, Attention, Waiting, Sitting Still, Sensory issues, Anxiety with noise and crowds, and heat and light sensitivity were a few. if we had seen any of the shows this would have allowed us preferred seating in the front right before the show would start and access to an exit, but we decided not to risk it this trip. It also allowed us to access rides through the accessible entrance or in some cases the fast pass entrance, and in other cases that access was through the exit of the ride.

In most cases we would go to this entrance and either one other family or no one in front of us. We would be greeted and then have to wait one cycle of the ride, so if they were loading the ride or it was going we would be on the next 1-2 ride revolutions. Typically our wait was 5 at most 10 minutes and we were in a shaded, not crowded area where Holly would not be disruptive. Then we were able to board the ride. In many situations the actual ride wait was hot, cramped and a wait of at least 45 minutes. While this is not designed to "Cut" the lines, I felt like it made our experience doable.

I feel like without this, not only would we have been able to do maybe 25% of what we did, Holly would have been miserable and spent much of her time wanting to go home, I don't think we would have lasted the heat of the second and third day, and our trip would not have been successful. This also allow us to push Holly a little bit and try things. In one occasion I rode a ride first to see what it was like and then decided not to take Holly onto it. Also it would have allowed Joel and I to take turns riding each one waiting with Holly while the other rode, if we actually went on any of the grown up rides together.

Finally Kathy was pregnant, so I think this helped her out a lot with the limiting of the amount of standing we had to do. I highly recommend this pass for anyone who has a child with special needs. Disney itself is overwhelming, scary, and a sensory explosion. Any opportunity to minimize possible negative moments makes the trip all the better. Holly simply does not have the patience of other kids, the tolerance, or the impulse control to handle long lines. Also the pass allowed us to bring the stroller with us where ever we needed to which was nice, she had a safe place to hide when she needed one.

Fragile X Friday - Updates

So both a lot and a little has been going on in terms of Holly's therapy, so I will post a few updates here. Since she turned two this month we had her Annual IFSP. It actually went surprisingly well. She has at least a 33% delay in all domains, so she qualifies for all current services. Her speech is more difficult to describe, according to the report her receptive language is in the 6th percentile, and her expressive is 2nd percentile. The age equivalents are 20 months and 15 months respectively.But both of these include the use of signing as language, since it is technically a language. So the third domain is speech, which is supposed to be specifically related to verbalization. The test doesn't score it formally so the therapist reported it as between 9-18 months (yes broad I know) since she has some scattered skills. So Speech is our area of largest concern. She isn't really verbal yet, though she is beginning to try to speak again. See at Thanksgiving she could say "Go Go Go," actually in September she could say that. But she doesn't say it now.She rarely even say's mama or dada or baba, she uses the signs, because they are very clear and specific, sometimes I guess with her words, we don't differentiate between babbling and an actual request. Also, we were out of town over Christmas and she went 5 weeks without therapy. When we returned she had a new therapist, who not only did she have to get used to, she also had a very different style and decided to focus on teaching Holly the pecs system.The theory being that it takes her Motor Planning "Energy" to make a sign, and it doesn't take the same effort to present a picture, so upon receiving the picture we can encourage the "Speech" and creating a sound, and she can use the motor planning "Energy" on her mouth.The thing is, Holly loves signs, she has maybe 40. But she is not very articulate. Drive, Star, Bike all look the same, Horse, and Daddy look the same. She doesn't have the fine motor skills to really learn advanced words, but she watches baby signing times and learns them on her own.So the next problem is she asks us or tells us something with a sign, but we don't know all the time what the sign is, either we don't know it at all, or can't tell what sign she is doing, so we are frustrated. So with all of this going on, we made a request at her IFSP to increase Holly's speech therapy by 1 hour a week. This would allow the therapist time to deal with her oral aversion and also focus more on speech.But there are other issues too. Since Holly has a 33% delay in her fine motor skills, we requested that she get an official OT eval and possibly add an OT to her list of therapists. Katie our Infant Development Specialist is an OT, so she gets the advantage of an OT, but Katie has a lot of other things to do with her time. In Particular Katie works with her on a lot of her Sensory issues, and helps us in navigating what they specifically are, also with self help, social, and an over view of other domains.So having a 4th person focus on OT skills would free up Katie's time to work on other items. The thing is, the Speech increase has to go to an exception committee, which I think happened today. The regional center is in the process of moving there offices, so it is a little hectic over there, I haven't heard from my case worker so I am not sure if the OT Eval needs to be approved by the committee as well. But I hope to have that happen soon.So then, to through another wrench into the system, we are looking into a new program called Small Voices. This was recommended to us by our Case Worker, and it is actually just like the pre-school scenario I was looking for a few months back. It is 3 days a week, Tue/Wed/Thurs from 9:30-11:30 each morning. It is a parent Participation program, at least at first, but eventually I might be able to drop Holly off, just like real preschool. She only qualifies until she is 3, so this might allow her the opportunity to prepare for really preschool at three.So here is the Catch, if we switch to small voices, then we loose our Infant Development Specialist, whom we love (Katie) and has been seeing Holly since she was three months old. But the program has an IDS, and OT, and a Speech therapist, each day two of the three specialists plus an aide are in the classroom with about 10 children. We would go basically from 2 hours a one on one therapy a week, to 6 hours of group therapy. But it is very scheduled and does a lot of coll things.We are going to visit for a day in two weeks, to see if we like it, but I talked to the coordinator for about 45 minutes and it sounds like everything I had wanted before I changed my mind about preschool, so now I don't know. It's free, its only 6 hours, and It would provide structure, routine, socialization in a group play setting, sensory and feeding activities, self help.But it will be a lot to juggle, (not to mention having to get up and arrive by 9:30) if we are doing this three mornings a week, and then we have swim and gym on Fridays and then potentially four additional one on one therapy sessions a week. It will make a big dent in our social schedule, because she will basically come home and nap, so we will only have afternoons free.I guess there will be more updates with details on our visit, and hopefully with news from the case workers, and perhaps even information about her OT eval. I think the last thing that I will mention is that we have our next appointment to the UC Davis mind Institute on April 22nd. At that time Holly will get an autism assessment since she is two. And participate int he Fragile X Baby Study.We have also increased her Sertraline from .15 to .25 on a trial basis about a week ago, so Dr. Hagerman will assess the increase and let us know if we should stay the same, increase more, or decrease back down. Holly still does experience quite a bit of anxiety, though I push her a lot more then the parent's of many typical kids push there children because we are so busy all the time. But there has not been that Language explosion we were hoping for yet, though I do think there is definitely a big decrease in the anxiety, even though it is still present.The other issue is Holly's ears. Her hearing tested fine, but she had an ear infection when we went to our two year pediatrician visit. We just got over two ear infections not 3-4 weeks earlier, so perhaps they never actually healed, or maybe it was a new infection. It is hard to stay. So the doctor has her on antibiotics again, though she just finished them, and we go back next Tuesday. If she isn't completely healed, and there is still fluid she wants to aggressively push tubes.She says that the infections and the fluid cause a speech delay, so when we are working really hard to improve her speech these are working against us, and sometimes Holly tries to talk, like say the word Bear, but is sounds like "baaa rrr" So it is possible that she hears Bear in that way. When I asked the speech therapist about it, she indicated that in the banana curve of audible sounds when there is fluid in your ears there is a loss of about 30%.So if she continues to have this issue when she is developing speech it will be harder an harder to teach her to speck, and in particular in a clear manner. So while I am really nervous about tubes and a procedure like this, it may be the best thing for her. More to come when some of these issues will hopefully have an outcome.

Toddler iPhone / iPod Touch Apps

Holly is almost 22 months now and for about 3 months she has been using my iPhone daily. We have about 30 apps for her which I will discuss below. Some are interactive songs like "Wheels on the Bus" other's are flash cards, some basic picture cards other's developed by speech therapists, some are the ABC's with animations of a word, some are animals that make the sound and say the name. Some are matching shape and color games, some are sounds and music, even a piano.



It is shocking to see her turn it on and navigate through the games, locating the icons and playing them with no help at all. She even has video's on there and watches them when she gets anxious and needs to remove herself. I'm thinking of getting her a iPod touch because it does all the things the iPhone does, but she has begun to call people now, and is always using my "phone" so one of her own with out the "monthly fee" fear of breaking it, and "crank calls" might be perfect.



Here are the apps I recommend.

The one developed by a Speech therapist is called "Learn to Talk" I paid 15$ for it and it was on sale for like $1.99 recently. This one is the "best" and Holly's speech therapist thought it was really good, as it categorizes "High Impact Words" and 1 or 2 word Phrases, so uses the same groupings that a Speech Therapist would use, the art isn't as nice, but the educational underlings are superior.



The other's Holly really likes (Better art and Animal sounds too) are: Voice Toddler Cards (Sai Services), iTot Cards (Toddler Flashcards By iTot Apps), Letter's A to Z (True Learning), Tapping Zoo (Tipitap Apps) These are all 99 Cents.

I would also recommend anything by Duck Duck Moose, they have a "Wheels on the Bus", "Itsy Bisty Spider", and "Old Mac Donald" that Holly loves. Also anything by 3dAL I have several of their apps which are like shapes, colors, music, sounds, animals, various games. These were all either .99 or 1.99 also.



The new one we just got is called "Little Cook" where you add ingredients to a salad or a pizza and "cook" something for your friend to eat, and she responds to it based on the ingredients you add. Another new one is BumbleBee Touch Book, it has a video or an interactive book, I think there are a lot like this. We also have one called "Pet The Animals" which was free and it vibrates when you pet them and has animals and sounds, there are "ads" because it was free but its worth a try to see if the little one likes it.

Another free one that is advanced for the kids, but Holly still likes it is "Shapes" by Toddler Teasers. It shows like 3 shapes and says, touch the circle, then after like 3-4 of these you win a sticker, and then it gets harder, like 4 shapes and touch the hexagon. When you touch the wrong one it says, triangle, try again, touch the hexagon (for example) She actually gets it in the first or second try like 75% of the time and its fun and Free.



The specific 3dAL ones we have are "Make a Martian" Her all time favorite App called Adventure, there is one called Preschool Music. I think Adventure might also be called "Preschool Adventure" officially, That one has 6 built in games, one shapes, one colors, one numbers, one "monkey" body parts and one animal sounds.

there are a couple of free baby sign language apps if you interested you can search for those, we have like 3, but she isn't that into them, but your kiddo's might be, and I sometimes use them for reference.



One in her top 5 is called PreK Safari I have the lite version so I think it was free, but I am thinking of upgrading, not sure what the difference is, but she likes it a lot too. Its the alphabet and safari animals on each letter.

She also uses a free "non toddler" app called Doodle Buddy and draws and uses the icons to make shapes and pictures, they have other ones too that are like white boards for "finger" drawing. She has some other coloring ones but isn't too interested yet.



You can also put video's on here, right now we have Yo Gabba Gabba on her own play list, which she navigates to and selects the episode she wants to watch. I plan to add the Baby Einstein and perhaps if I get them the signing times, but you could technically put any show your kids adore with the right techie help and know how.

She also has her own music play lists with nursery rhymes and kids songs.

Fragile X Friday: Visit to Mind Institute @ UC Davis with Dr. Hagerman

We went to the UC Davis Mind Institute about a month ago to see Dr. Hagerman and continue our participation in the baby Study. We arrived and started out with the video experiment's first. I am not sure how much of this I have described in the past but briefly, it consists of Holly sitting on my lap and watching some video's. The computer tracks Holly's eye movements and records what she is looking out. There are several video clips, each a few minutes long. All pretty boring compared to the TV Holly is used to watching. Also this visit there was a new team of experimenters. They of course were really nice but I missed the old ones, they had history with Holly, knew her since her first visit at like 6 months old. The video is testing for several things, they explain it every time, but I can;t remember the details now. There is this dural thing that goes from the front to the back of the brain on the top and on the bottom, they are looking at the top one, and it has to do with perception of movement. So in some of the video's there were vibrating lines or boxes at different speeds, sometimes it measured if she even noticed the movement, other times one box would be out of sync with others and it looked to see if she noticed that. They also had a video with faces, upside down and right side up. Another one with sound and images to see if she would look to where the image should be when the sound was played. In between each we found some Yo Gabba Gabba video's from Youtube and she watched them and took lots of breaks. I thought she did terribly, as she needed to eat and snack and she wiggled and got mad and didn't want to stay on my lap and watch. But the experimenter's told me that she did amazingly, even when she was fussing or eating she was watching, and they reported many kids only get through one or two videos and I think she did like five of them, so they were excited.We hardly had time for a break before we had to go and do the Mullins, but I demanded that she get at least ten minutes to run around the playroom, or else I knew she would be too fussy to sit on my lap and participate. She did really well on the Mullins in my opinion, but there was a lot she didn't know. They gave her nesting cups again, and in the time allotted her she completed 3 of the4 which I guess is an improvement, though not a reflection of what I feel she can do. they did a very interesting thing where she put this large plastic coin into the top slot of a piggy bank, when they handed her the coin where it was upright vertical and the pig was in the same direction she got it in every time. But when they turned the pig so the slot was horizontal she did not figure out to turn the coin to get it in. She kept trying to push it in, but never turned the coin. I thought this was very interesting and it wasn't a skill I had ever though of, but then I remembered that she has this set of three books that go into a book holder and she likes taking them in and out, when it is aligned correctly it is a fine motor skill challenge to get it in, but when it is turned she wasn't able to do it, so I had observed this without realizing it. So now I knew it was something I needed to work with her on, which was a revelation.The other thing was they showed her some books with two or three pictures and then would ask her, where is the "Cat" or "Car" in many cases they simply were not words or items she had been exposed to or would know or has been taught so she had no clue, but it was also not an activity we had every really done, me asking her where is the "blank" she she got all of these wrong, besides the fact that she wanted to grab the book, play with it, and turn the pages. Another one was matching, which we kind of sort of had worked on, and at least I sort of taught her the word same. So the tester would put down a key and a car and then show her another key and ask her to point at the same or give her the same. She did about 50/50 on this I think, the problem is, both were out of reach and she wanted to explore and look at them both, so she would reach for both when they were pushed into reach, not listening to the request for same, but instead her own desire to look at the items. had the experimenter given her both items to hold and look at first, then shown her a match and asked, give me same I think she would have been able to do it. but in this scenario she didn't have the impulse control to not grab both. There were many other things she did, coloring, where they wanted her to copy drawing a strait line across the paper, but I was proud she even marked the paper at all. A few looking at her grasp, picking up small items taking things in and out of containers looking for hidden objects, but the ones described above where she struggled were the ones I remembered most.

After this we had another very short break, maybe less then 5 minutes before seeing Dr. Hagerman. Holly was very tired at this point. She was fussy and cranky. when we were last there she wasn't walking independently, so to see her running Dr. Hagerman was excited and impressed. She did a physical exam, chatted with us, observed Holly, and reviewed the early scoring of the Mullins.This is an excerpt from her report: "She participated in our Baby Study and had a follow-up Mullen. On the Mullen, she scored 18 months for her chronological age. She scored 20 months in visual reception, which is in the 73rd percentile. Her fine motor score is 16 months, which is at the 14th percentile. Her receptive language score is 11 months, which is at the first percentile. Her expressive language score is 8 months, which is also at the first percentile. This gives her an overall early learning composite score of 73"

When we were talking everything she said didn't sink in right away, some of it did while we talked further, some not until later after reading the report. When she said Holly was in the 1st percentile for language I didn't understand what she meant. All of my life I had been measured int he 99th percentile, top 5% so she had to repeat this three or four times before it sunk int hat she was at the complete opposite spectrum 1st percentile in language, meaning 99% of children her age are more advance, and what shocked me most about this, was at the time I was in fear of loosing speech therapy service. here a specialist is telling me she is concerned about her language acquisition and that she should be seeing a speech therapist 2-3 times a week, and I am fighting with the regional center to keep get her speech at all, and then to keep it, because her delays may not be significant enough, how these two things can both be possible in the same system appalls me when I think about the lack of services out there for children, and budget cuts, and getting the things she needs. the other thing that didn't sink in was that they called her borderline, as in intelligence, as in her composite score of "73" not realizing this was an early equivalent to an IQ test, and of course how could she score anything higher when she can't speak or communicate yet, but again that number or the fact that they were equating this to IQ took a little bit to hit me.
I am not saying that I am living in complete denial, but I have been working on the theory that she has the capacity to be main streamed in a regular classroom, and will graduate high school and all that Jazz. I am not saying I suddenly don;t think that anymore, I still do, but I am coming from a perspective of having an IQ of something like 137, and Joel's is even higher then mine. When I was pregnant, I realized that it was completely possible her IQ would only be between 100-80 is we were very lucky and she was in the top 10% of fragile X girls, but since having her, all her accomplishments really had me thinking she was right up there on the higher end, but then I guess compared to the language development of her friends, 3 months younger, she is much further behind. I also realize though, that this is hardly any indication to what her "scores" might look like at 3 or 5 or 10 for that matter. But it was also a bit of a shocker, wrapping my brain around a number. When I heard numbers like 12-14 month level, knowing she was 18 months, I was thinking well that's not even 33% that doesn't even qualify her for services, that's only a few months behind, but then hearing it in this different format sort of struck me differently. On a positive note, another thing that didn't sink in until I read the report, was that Dr. Hagerman was super excited that her visual processing scores were int he 73rd percentile, she was ecstatic and said that is rare in fragile X kids. I was thinking, hmmm... 73rd isn't so great, obviously better the 1st, but she sure is excited. When I read the report that that meant she was in the 20 month range, I realized that 50% is average, and 18 month range, so being above 50% meant she was actually advance compared to neurotypical kids in this one area. This was great news. While in the office, as I said earlier Holly was fussy, so I had pulled out my iPhone and we were looking at her flash cards and ABC Animal App, and Dr. Hagerman was amazed with these and said that we should do these with her several times a day and get video;s for her and that with such high visual perception scores she will be able to learn much faster in this way. Just tonight we put on Baby Einstein's My First Signs, which she hasn't watched for a while and we noticed her sitting there trying to copy the signs and repeat them, she was babbling in sign language. She couldn't quite get her hands to articulate the sign, but she would clearly be sitting still watching, then see the child on the scree make the sign, then try to do it herself, she would move her arms or hands in the same motion to replicate it, but didn't get her fingers in the right places. We were amazed. So this was a good thing.

The other major thing we discussed was her anxiety. Things that I described or even observed in the office as being fussy, Dr. Hagerman interpreted as her having anxiety. Exposure to animals, participating int he exam itself, issue with her personal space. Difficulties falling asleep, easily frustrated, even some lack of attention and focus. Dr. Hagerman explained that it was very common in Fragile X kids to have uneven levels of Serotonin production, and this not only deals with things like Anxiety but also language development. She indicated that there have been some studies done that upon starting a course of Sertraline (Zoloft) there is a language explosion. The notion is that if the serotonin levels are properly regulated, then when the back part of the brain is trying to communicate with the front part, traveling along these serotonin pathways there won;t be as much of a delay. A practical example of this is when we sing the Open Shut them song, Holly responds a verse after it is sung, so I will sing about putting out hand in our lap, but she doesn't respond with the action until I have almost completed the next verse about clapping, so she is off, because her processing time is so slow to think about what she want to do and then tell her brain and then for her brain to tell her hands, all of this supposedly can be helped with Serotonin. Also the thought is that if she had decreased anxiety then she won't get frustrated so easily and she will stick to a task and master it and learn. So we decided to give this a try.
Another excerpt from the report on dosage: " This would be the liquid sertraline which is 20mg/cc. I am recommending 2.5mg or 1/8cc by mouth each morning. If we do not see a result with 2.5mg, we may later increase this to 5mg each morning. The dose can be cut in half if she becomes hyperaroused or more hyperactive on the medicine. " So the amount we are giving her is really small, and it needs to be mixed with certain kinds of juice or lemon aid, so I have a 1/2 ounce medicine bottle that I am using. At first the medication said to mix it with 4 ounces of liquid, I thought that was insane, but read in someone else's blog on how they had to do that and thought it must be true, and wondered how on earth will I ever get her to drink 4 ounces of juice or lemonade. But after 2 days I called the pharmacist to ask if I could instead add it to formula, which i know she will drink 4 ounces of. he said no, there is a reaction with dairy, but that I didn't need to give it to her in 4 ounces because her dosage was so small the 1/2 ounce was fine. So every morning she has been taking it. She has not had any adverse reactions, and in short I will give you a summary of our observations so far.

So the other thing we started Holly on was Melatonin to help her sleep at night. this is a naturally occurring hormone that it is possible her brain isn't making enough of, so it isn't triggering the message to sleep when it is night time. This is over the counter and she is taking it in small doses, about 1/4 the adult dose. Sleep issues are very common with Fragile X kids, and I am happy tp report it has worked amazingly, during the first week it went from 2 hours to get her to fall asleep to 20-45 minutes. Since then we have implemented a new bed time routine where Joel puts her to sleep and stays asleep with her. he then wakes up early at 6:00 AM to work on projects. I think this has helped relieve stress and pressure on me, but also she knows daddy isn't trying to "leave" as soon as she falls asleep, he makes the room boring, and she doesn't fight it. Joel thinks she was fighting to stay awake to hear me sing and basically manipulating me, while I thought it was soothing her, in a way it was, she wasn't squirmy, but she was also staying awake to listen. So this new system has been amazing.

After we rapped up with Dr. Hagerman we met with Vivien and we completed the Vineland assessment, which is basically our own report of her developmental status, and then it was time to go home. I am going to conclude this post, and start a new one with our observations of Holly after being on Sertraline for 1 month.

UPDATE - Related Links:

http://mindbrain.ucdavis.edu/people/srivera

http://mindbrain.ucdavis.edu/labs/Rivera/research-areas/fragile-x/fragile-x

http://hollyzzdavis.blogspot.com/2009/11/fragile-x-friday-part-2-observations-of.html

Joan's Farm & Pumpkin Patch

So I decided to treat everyone with an early post about the Pumpkin Patch. We went this past Saturday and had a lot of fun. I figured that you already saw the cool Pumpkin and Animal Pictures so now you get a chance to hear the whole story.We were late, of course, only about 45 minutes but our excuse is that this particular Pumpkin patch was all the way in Livermore, so it took us about 45 minutes to get there. Both Joel and Kat were about grumpy about being drug out early on Saturday morning, but their tune soon changed.This is the picture just before Joel's "Perfect" shot. Holly running off into the patch, surrounded by little baby pumpkins. When Joel got the shot he was so proud, showed us and jokingly said, "Ok, we can go now!'I don't blame him, it was hot and dusty, but everyone was starting to get a little excited, seeing Holly having so much fun running around. There were a lot of cool little things you could do there like riding the hay horse.We were meeting many of our friends there but the farm was big and we didn't find them right away. We took a lot of breaks because it was really warm outside and we wanted to be sure not to get dehydrated. We gave Chloe's parents a call to find out where we could meet them and continued exploring. The patch was huge and there was plenty of space to run around. You can see the neat corn sign ahead, they had them all over for fun pictures.This is another amazing shot Joel took of the pumpkins. There were lots of opportunities to be very artistic with our photography. It was a fun backdrop for a fun playdate. Lots of neat little things everywhere we turned.This was a fun height chart, perhaps for the kiddlets, maybe for the pumpkins, it wasn't super accurate but it was a neat picture. After exploring we headed over towards the animals.We stopped to watch the pony rides for a few minutes, but the line was really long and I wasn't sure if Holly would have fun or not. I am allergic to horses so even though they would let me walk with her, I wasn't sure my nose could handle it.We saw the animals for a few minutes and planned on heading back and then walked around with Chloe to find Satine's parents. We found them having a snack and while we chatted the girls ran off to play.There were all kinds of things to climb and play on, little trains, tractors, and even statues. They had this whole "old timey" village thing set up and there was even a teepee. Holly had fun looking through the house windows, and walking in and out of the doors.There were a bunch of wagons and wheel barrows for people to use to lug around there huge pumpkins. Holly liked the wagon and saw this one sitting there, so she decided to help them out and started pushing it across the lawn.She was making friends where ever she went and had a lot of fun finding all kinds of things to get into trouble with. She even went up to one of the exhibits and tried to climb inside it. Things like wired fences are no match for her.After our snack we decided to go on a hay ride, while it is certainly not a train, and it wasn't being pulled by horses it was still a lot of fun. Holly likes taking rides, I think in part because she gets to sit on my lap and move around while she is also going.We sat with Chloe and Satine, whom all had a lot of fun. This is Satine with her Daddy whom we just met for the first time. He was really nice. It is always a lot of fun getting to play with the Dads. Joel decided to sit out of the hayride, he was feeling dehydrated and wanted to take a little rest.Here is Holly with her Tanta Kat behaving like a good girl. Our wagon was being pulled by a tractor and we were sitting near the rear so there was no door to close off the back where we climbed in.Holly did eventually try to get up and explore but it wasn't all that safe for her to walk around plus it was really hard to balance, so she mostly stayed with us and climbed in our laps and looked over the side.I love this Family picture of Eric, Katherine, and Chloe. She had asked Sandrine to snap a shot of the three of them together and I was able to take a few from my vantage point while they were in position.Holly was getting really hot and she drank half of Kat's water and then started in on her juice. She is getting to be really good with the sippy cup, and on this day got a lot of practice.We drove by a corn maze, which Chloe and her family explored later in the day. We decided to pass and wait until Holly was old enough to navigate the maze herself. They reported back that it was indeed a little bit of a challenge and a lot of fun.They also did have a "little car/train" ride for the kids, but they had to each be smaller then 80 lbs and sit individually in the cars, so the girls were all too little to do that. They were very curious though when they saw it as we rode by.Earlier in the day Felicia and Thatcher were in attendance but they had arrived early and left just before we came. They had fun, but it was getting hot for them too, and Thatcher was getting cranky.Kassandra and Magnus were also supposed to be in attendance, I called on them to check but it went strait to voicemail. She had told me earlier int he week that they were going to breakfast and would be early, so we assumed we missed them too.Holly finally broke free and we let her sit on the floor of the wagon. She was very curious about the hay and wanted to pick it up and look at it. Surprisingly she was really good and did not try and eat it.Here is Chloe and her daddy taking in one last look of the scenery before we all hopped off of the wagon and our ride was ended. Chloe looked excited about the maze. We had heard there was a shorter hay maze for the little ones, but when I asked they said there wasn't.Here is little miss Holly. Her daddy missed her so and came to greet us and whisk her off the back of the wagon. You can tell she is already looking pretty tired here, but we still wanted to go and feed the animals.Here Kat is filling up the water bottle that Holly scarfed down earlier. They had these old time wells, Kat said it was just like getting water on Little House On The Prairie.Again to our surprise, Holly did really well with the animals. She was happy to see them and reach in through the fence towards them and not afraid at all. She liked the goats and tried to pet them on her own.They were really friendly and she was very curious about them. They all came right up to her and were eager to get attention, although I suppose they were looking for food, which we eventually gave them.For a quarter you could get a cup full of pellets, they didn't really last long. Kat fed them a hand full while Holly watched, she did Ok, so then Kat put a few pieces of food in her hand and helped her hold it out for the goats to eat.She did really good and wasn't afraid at all, but then they tried to lick her hand and she needed to take a mommy moment to recover from the brave thing she just did and recharge a bit.So of course Mommy heard her loud and clear and picked her right up and told her how brave she was and how fun it was to feed all of the animals. Tanta Kat continued to feed them, I think in all we got 3-4 cups of food for them.After her break she watched from afar again holding onto Mommy's leg, but eventually her curiosity got the best of her and she was eager to try feeding them again.She needed help to keep her hand flat and steady, and of course mommy silently worried about her getting bitten, but assumed if all these kids came through the petting zoo unscathed, she would probably be alright to.She fed them again and then ran off to the next area where the Chickens lived. Well she really liked them, she must have been able to speak there language as she was so verbal, she was telling them a story and squeaking and squawking every which way,You couldn't really pet the chickens very well and the fence had much tighter weave and you couldn't really feed them as they would peck your palms even if you could get then through the fence, so we bought them a cup of there feed and then splashed it on the ground.They all came swarming, which she quite enjoyed. She giggled and laughed as she watched them eat up the food. This was a little wheel Barrow left behind and Holly decided she wanted to push it. Rather then risk her getting hurt I decided to give her a little ride as we headed back to meet Chloe again. She quite enjoyed it and it ended up being less work then carrying her. But on the other hand...Joel was convinced she would get tetanus from the rust and totally did not want her in the barrow and was sorta trying to get me to take her out. He ended up washing her hands and even the little pumpkin she was playing with in hand sanitizer foam.She did need to wash them though, after touching the animals. We met up with Chloe and Holly immediately ran up and tried to free her from the stroller. She leaned in and gave her a little kiss to, which was so adorable.Then she grabbed for the center button and kept trying to push it so the latches would open. She knew how to do it, but didn;t have the finger pushing stregth to get it to work. Chloe was tired form the maze anyways and not ready to climb out yet.We headed back to the Pumkin Patch for one last visit before heading home. katherine hadn;t gotten the "Magic" shot of Chloe in the pumpkins yet, she always managedto turn her head just beofre the camera would click, so we decided to try again.I think I got some really good posts of both Holly and Chloe playing in the pumpkins, I posted them earlier. it was a loot of fun to chase after them trying to get the pictures, and then later looking back through them.But as you can see, there were still lots of shots when they weren;t all looking at the camera, you have to take 100 to get that one perfect shot. Trust me, I did. Just before we were heading out Khan and gabriel and his Auntie and Daddy found us and joined us. The girls all ran up to gabriel and swarmed, when he arrived.I thought the pictures of Chloe trying to hold his hand were adorable. Holly tried to give hima hug, and then she was intrigued by the clips of his suspenders. He loved the pumkins and his adults reported that he had spent the last hour climbing all over them.It was time to say good bye, all of the kids were starting to look sleepy and pretty worn out, it was a very active day and most of the time Holly was walking around the whole place on her own.I was sure she would pass out int he car as soon as we hit the highway, but that was not the case. She was just actually ready to go, and hot and dehydrated. She drank the rest of her juice, some more water and some of Mommy's Jamba Juice all in the car on the way home.She even munched down a snack, but alas she just needed a break and she never fell asleep, I tried to put her down for a nap when we got home, we had been out for several hours, but still a no go. She ended up staying awake until 6:00 PM. She finally fell asleep just after, thank goodness, as Joel and I were headed out the door for a dinner and movie date night.